We tend to think of the elderly and frail in care homes as being the most likely recipients of NHS Continuing Healthcare Funding, but young adults may be equally entitled to this available NHS pot of free funded care. Too often, young adults fall off the radar and can be overlooked when it comes to NHS Continuing Healthcare Funding. In practice, it could mean that many eligible young individuals are missing out on a package of free funded care that is available to pay for all their daily healthcare needs.
Remember the underlying foundation of our NHS health system is that ‘care is free at the point of need’. So, where there is a health need, care should be provided by the NHS free of charge. That is the basic tenet of our health system, but in practice, accessing free care for long-term healthcare needs is not as easy as it sounds.
NHS Continuing Healthcare Funding (often referred to as ‘CHC’ for short) is a free package of care funded by the NHS for anyone over the age of 18 who has a ‘primary health need’ ie the main reason for their care is for healthcare reasons rather than social care. It is often forgotten, that CHC can apply to young adults, too, not just the elderly and infirm with chronic and challenging long-term illnesses, advanced Dementia and Alzheimer’s.
CHC Funding is available to meet an individual’s health and associated social care needs that have arisen as a result of disability, accident or illness. As long as the individual is 18 or over, age is not the primary concern. CHC is about health needs.
So, for example, a young adult in their late teens/twenties or even thirties may equally qualify for CHC Funding if they have a primary health need – often thought of as being needs akin to round-the-clock 24 hour nursing care – and which could arise from birth or early childhood. Unfortunately, disability, accident or illness can strike at any time, perhaps caused as a result of:
- Severe life-changing injuries from a road traffic accident or accident at work
- A rare genetic condition
- A muscle disorder
- A respiratory disorder
- A degenerative brain condition
- Sudden stroke leading to paralysis
- Mental illness
If the young adult’s needs are intense, complex or unpredictable they may demonstrate a primary health need and qualify for CHC Funding.
A ‘primary health need’ is a somewhat artificial concept developed by the Secretary of State and is used to help determine whether an individual is eligible for CHC Funding – ie funded care provided by the NHS. In default of meeting the eligibility criteria for CHC, the individual may be passed over to their Local Authority to see if they qualify for social care instead.
The difference is that social care is means-tested, and so, if the individual has more than £23,250 in savings or capital – which includes the value of their home – they will have to pay for all their care, and care is expensive. However, in reality, most young adults who are eligible for CHC Funding are likely to be in receipt of benefits, and if means-tested, may be at risk of having to make a contribution to the cost of care from those benefits. This could be to wipe out or substantially erode their benefits. In many of these cases where CHC is applicable, a jointly funded package of care is agreed between the NHS Clinical Commissioning Group and the Local Authority.
Accessing CHC Funding from the NHS can therefore save a young adult and their family many thousands of pounds a month in care fees if they can show a primary health need and qualify for funding.
CHC Funding includes the cost of healthcare, social care and accommodation (if that is part of the overall need). So, if a young adult requires 24 hour care, that can save a lifetime’s fortune in ongoing weekly care fees.
Important: It doesn’t matter where the care is provided to qualify for CHC Funding. So, if the young adult is cared for in their own home, parent’s home or a care facility, then they should still be eligible for funding – as long as they can meet the eligibility criteria and show a primary health need.
Assessment for CHC Funding (ie a primary health need) is carried out pursuant to the guidance contained in the ‘rule book’, known as the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. This is a national set of guidance applied by all Clinical Commissioning Groups (CCGs) when assessing whether the young adult has a primary health need. The trouble, as we know, is that the National Framework isn’t applied uniformly across the country, leading to a disparity in outcomes as to who is most likely/unlikely to be awarded CHC by reference to where you live, rather than being judged on your particular needs!
It is therefore essential that you read and understand this guidance as best you can, as these are the rules and tools of the process by which CCGs are supposed to conduct fair and robust assessments. You cannot know your rights and support your relative’s claim if you are not at least familiar with the process, how it should work, what to expect at an assessment, who attends from the CCG, who can represent your young relative, and what evidence of need should be taken into consideration when making a decision as to their funding.
If representing your adult child or young relative at an assessment, could you spot an abuse of process? What would you do about it even if you did? To whom would you complain, how and when?
If undertaking an assessment on behalf of a young adult or relative, you really need to understand the National Framework, as it is complex and primarily designed to assist the CCG’s appointed assessors, rather than young adult being assessed – despite the Framework intending to put them at the centre of the process.
Quite understandably, many families going through the assessment or review process find it overwhelming and emotionally fraught as they fight for their child’s rights for CHC Funding. There is expert help available at all stages of the process. If you require specialist help, we recommend you visit our 1-2-1 Support page. For young adults with complex needs, you may be pleased to hear of a unique service offered at: https://www.farleydwek.com/young-adults-with-complex-needs/
The assessment for CHC Funding usually starts with a Checklist screening assessment to see if the individual can move on to a full assessment.
The full assessment is conducted by a Multi-Disciplinary Team at a meeting. The MDT should consist of at least 2 professionals from different healthcare professions (or 1 healthcare professional and 1 social care worker) who are familiar with the individual’s needs, have been involved in their care and have been trained in the National Framework. The MDT panel assess eligibility for CHC by reference to the Decision Support Tool. At the end of the MDT assessment, the assessors will make a recommendation to the local CCG as to eligibility for CHC Funding. The CCG will usually follow the MDT’s recommendations for funding.
According to paragraph 55 of the National Framework:
“55. An individual has a primary health need if, having taken account of all their needs (following completion of the Decision Support Tool), it can be said that the main aspects or majority part of the care they require is focused on addressing and/or preventing health needs. Having a primary health need is not about the reason why an individual requires care or support, nor is it based on their diagnosis; it is about the level and type of their overall actual day-to-day care needs taken in their totality.”
In summary, there is a common misconception that CHC is just for the elderly. It isn’t. As we have shown, there could be numerous health conditions in young adults which would be equally deserving of CHC Funding. If you are a family with a young adult in need of care, consider applying to your local CCG for an immediate assessment.
We would also welcome comments from families who have been through the process and to share your experiences below with others to give them encouragement, hope and support. Are there any tips you can share to help them secure CHC for their relative or child?
Our Care To Be Different website provides many of the answers to your problems and questions. Read the vast array of articles about CHC Funding and tap into our resources free of charge. Learn from other families who have had to fight the NHS for funding for their adult child.
If you want professional support and advocacy help at an assessment or MDT panel meeting, visit our 1-2-1 Support page.